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Getting a diagnosis for 2 year old

Gpcoop93
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Gpcoop93 Newbie
Gpcoop93
Posted

Hi! I've never posted on a forum before so this feels a bit bizarre! But I'm now desperate to find out some opinions!!

My daughter just turned 2, for the last year(ish) she has been a very difficult child, impossible to get to sleep (she often would be wide awake at 11pm!) Once she was asleep she would wake up all throughout the night often not wanting anything or me just screaming (and sometimes visibly in pain in her tummy. She eventually then had permanent diarrhea (sorry tmi!!) That was full of mucus and smelt very acidic/sour/extremely rancid! I tried everything to get her to sleep better/ get her in a good routine and nothing worked until I cut gluten out her diet! 

After removing gluten she was almost immediately a different child! Diarrhoea cleared up straight away and after a little while she was sleeping through the night, something she had never done before! I didn't realise she was supposed to keep gluten in her diet, so she was tested while only eating gluten for 2 weeks. 

Got told by gp (unspecialized doctor in the UK) she was negative for coeliac but did have a milk allergy so she referred my daughter to a dietician for the allergy. At the dietician apt she pulled up my daughters results and said her overall IgA was low, I think she said 0.17 and the normal range for her age is 0.30-1.20 so that does seem quite low. But she didn't actually diagnosed her as IgA deficient so I'm unsure if that value would be an IgA deficiency or is it just a bit low? She also said her thyroid was low but again didn't officially diagnise her with a thyroid issue just noted it was below the normal range. 

The dietician has referred her to paediatrics and recommended other celiac testing taking into account the low overall IgA, including genetic testing.

I know it's impossible to guess only the tests will tell but I'm curious to know others thoughts, does this sound like celiac?  I've read IgA deficiency can be linked with celiac and other autoimmune diseases like low thyroid so it all finally seems like its adding up!?  

(Ps she has been on and off gluten a few times and her symptoms always disappear after a while off gluten and return when reintroduced. She was off gluten for about 6 months and everything was going well, when the gp (possibly incorrectly) told me she was negative for celiac I reintroduced gluten, she was absolutely fine for about 2 weeks and I thought she no longer had an issue then suddenly all the symptoms came flooding back! Wondering if it can take a while for the intestinal lining to get damaged and create the diarrhea symptoms?) 

Sorry that's SO long! Thank you if you have stuck with me til the end! 

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trents Grand Master
trents
Posted
24 minutes ago, Gpcoop93 said:

Hi! I've never posted on a forum before so this feels a bit bizarre! But I'm now desperate to find out some opinions!!

My daughter just turned 2, for the last year(ish) she has been a very difficult child, impossible to get to sleep (she often would be wide awake at 11pm!) Once she was asleep she would wake up all throughout the night often not wanting anything or me just screaming (and sometimes visibly in pain in her tummy. She eventually then had permanent diarrhea (sorry tmi!!) That was full of mucus and smelt very acidic/sour/extremely rancid! I tried everything to get her to sleep better/ get her in a good routine and nothing worked until I cut gluten out her diet! 

After removing gluten she was almost immediately a different child! Diarrhoea cleared up straight away and after a little while she was sleeping through the night, something she had never done before! I didn't realise she was supposed to keep gluten in her diet, so she was tested while only eating gluten for 2 weeks. 

Got told by gp (unspecialized doctor in the UK) she was negative for coeliac but did have a milk allergy so she referred my daughter to a dietician for the allergy. At the dietician apt she pulled up my daughters results and said her overall IgA was low, I think she said 0.17 and the normal range for her age is 0.30-1.20 so that does seem quite low. But she didn't actually diagnosed her as IgA deficient so I'm unsure if that value would be an IgA deficiency or is it just a bit low? She also said her thyroid was low but again didn't officially diagnise her with a thyroid issue just noted it was below the normal range. 

The dietician has referred her to paediatrics and recommended other celiac testing taking into account the low overall IgA, including genetic testing.

I know it's impossible to guess only the tests will tell but I'm curious to know others thoughts, does this sound like celiac?  I've read IgA deficiency can be linked with celiac and other autoimmune diseases like low thyroid so it all finally seems like its adding up!?  

(Ps she has been on and off gluten a few times and her symptoms always disappear after a while off gluten and return when reintroduced. She was off gluten for about 6 months and everything was going well, when the gp (possibly incorrectly) told me she was negative for celiac I reintroduced gluten, she was absolutely fine for about 2 weeks and I thought she no longer had an issue then suddenly all the symptoms came flooding back! ) 

Sorry that's SO long! Thank you if you have stuck with me til the end! 

Welcome to the forum, Gpcoop93.

Unfortunately, we here this same story over an over about physicians failing to inform their patients that they should remain on normal amounts of gluten until testing is complete. There generally is much ignorance in the medical community about gluten-related maladies and many doctors still have a dismissive attitude toward these medical problems as being more psychological issues than a scientific reality.

Unfortunately, you would have to put your child back on gluten for at least 6-8 weeks before any future blood antibody tests would be valid. There is also testing for celiac disease via an endoscopy/biopsy of the small bowel as celiac disease damages the lining of the small bowel. This is considered to be the gold standard for diagnosing celiac disease but the "gluten challenge" is shorter, requiring at least 2 weeks back on regular gluten consumption. This might answer your question, "Wondering if it can take a while for the intestinal lining to get damaged and create the diarrhea symptoms?" Physicians in the UK are relying more and more on the antibody blood testing and the endoscopy/biopsy is falling out of favor. I'm sure cost of testing has something to do with that. In addition, physicians are very reluctant to do invasive procedures like that on young children anyway.

Having said all that, I think you have already proved to yourself that gluten is toxic to your child. The only question is, does she have celiac disease or does she have gluten sensitivity? Symptomatically they are very similar and the antidote is the same, namely, total avoidance of gluten for life. Certainly, it would be good to have an official diagnosis but is it worth torturing your baby with a gluten challenge to get there? 

One thing you might consider is getting genetic testing done for celiac genes. That may help firm up your conclusion. But realize that most people who have the genetic potential for celiac disease never develop the disease. It takes both the genetic potential and a triggering stress event for the disease to become active. Having said that, you need to realize that recent studies have demonstrated there is a 44% chance that the first degree relatives of someone with celiac disease will also have it or will develop it. First degree relatives are parents, children and siblings.

trents Grand Master
trents
Posted

Oh, yes. Concerning low IGA. Low IGA will skew the results of the blood antibody tests and many times create false negatives.

It also needs to be said that the same tests used for diagnosing celiac disease in adults are not as reliable when used with children. Young body systems just react in different ways to the same disease processes.  https://www.beyondceliac.org/living-with-celiac-disease/info-for-parents/testing/

Note this paragraph from the linked article:

Celiac Disease Testing in Children Under 3

Blood tests are not always accurate in very young children. If your child is less than 3 years old, you may be advised to see a gastroenterologist instead of relying on blood tests results.

Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! It seems you have at least part of the answer already: gluten sensitivity. Everything you’ve described leaves little doubt that she should not be eating any gluten. Whether or not you want to go down the difficult road to screen her again for celiac disease is up to you, but no matter the results her outcome would likely not change: a 100% gluten-free diet.

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    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
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      3 year old gluten intolerance?

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      3 year old gluten intolerance?

      By Nicbent35 · Posted

      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
    • trents
      3 year old gluten intolerance?

      By trents · Posted

      Welcome to the forum, @Nicbent35! There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet. There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease. Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.
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